A little off topic, facing my fear tomorrow and very scared

I wasn't sure whether to post this, I hope it's ok here. I've always appreciated your kind words.

In the last year I have been unwell with an underactive thyroid and chronic fatigue. With it my anxiety returned. I started with anxiety and agoraphobia in 2013 after my brother attacked me and I lost my grandmother suddenly. My family cut me off as I refused to ever forgive my brother and let him back in my life as it was a dangerous risk to my children. I overcame the anxiety then last year became very fatigued and weak, then my anxiety returned.

Last September having yet more blood tests (GP ignored my TSH was 5.35 and kept dragging me in for more bloods) I had a panic attack in the nurses room. I wasn't well that day with crippling fatigue, I was kept waiting 45 minutes and by the time I got in there I had a huge panic attack as she pulled the needle out I went all hot in my face and it triggered a panic attack. I have had agoraphobia before and that need to flee and run to my safe place, it hit when i was in the room but everytime I sat up to leave I went all dizzy, hot, shaking, couldn't feel my arm and I freaked out I'd faint. I was sobbing and couldn't leave. The nurse hugged me and eventually she helped me stand up and she walked me to the main doors holding me. I was mortified and since then can't do appointments, I've avoided them.

In December my health was taking a nose dive, my GP came to the house and wanted to run bloods. I let him, I panicked a bit, my face went hot and I was crying but he helped me through it. Since then I have avoided appointments and blood tests. I have gone into this little bubble of self protection and cut the world out. I was so ill with chronic fatigue and weakness, I felt so ill I just cut the world out and spoke to my GP over the phone. It's like I went into denial I was ill and for the last year have just tried to cope with this level of fatigue and illness myself.

In August my GP came out to see me, my fatigue had suddenly worsened and he came to give me a full check up. He said I needed to increase my thyroxine and he wanted to run a set of bloods on me. It's 5 tubes worth and he is testing for lupus, arthritis, EBV, iron, full bloods, liver, kidneys, diabetes etc... I have put the test off for the last 7 weeks terrified to do it, one because I expect the nurses room experience to happen again and I just didn't want to open a can of worms. I haven't felt well with my fatigue recently and I am terrified it will show something else is wrong with me and it's taken me a long time to get to where I am now which is mentally a little less anxious and I am getting out more again.

There was always an inner voice in me that made me want the reassurance I was well, and nothing stopped me having the tests, but I never used to panic at my blood tests. I used to also feel this inner voice to do anything for my children as I couldn't face leaving them. Even that has gone and I fear if I ever found a lump or something I'd not get it checked. That upsets me the most about this, I have lost that instinct to take care of myself for my children. My husband says that's not true as I have been taking care of myself all year, having therapy for the anxiety that's returned, eat well, do yoga, meditate and take my medication for my thyroid.

So I have booked the blood test for Friday, my GP told my husband he would come to the house so i am more comfortable and can lie down. He said he completely understands my fear and it's fine he is doing a home visit. He will be here about 1pm. My mind for weeks has played the movie in my head of me having a panic attack or fainting. I am terrified of it. If i faint it will open a huge can of worms for me as it's been my fear all year just day to day walking around, due to how fatigued I've been. My GP last time made me lie flat and told me I'd be fine lying down which reassured me. I never used to fear fainting, it's all from the nurses room panic last year where I went so hot and dizzy I felt I'd faint, but I didn't, she said it was a big panic attack.

I rarely get full on panic attacks so I am not sure how to cope with it. For me as soon as my face goes red and hot that is when panic hits. How can I learn to be ok with that red hot face feeling and not let panic wash over me? I am terrified I will make a fool of myself like I did last year infront of the nurse. Also how can i think more positive about tomorrow? I keep getting upset and feeling sick with dread. I don't want to cancel it, I know to come out of this little self protection bubble I've made for myself the last 10 months has to be broken, I have to come back into real life and face I need tests, face in life I will need to do things like this, I am human after all. I also need to know that the thyroid is just what's causing me to feel so drained and fatigued while it's adjusting to the appropriate dose of medication (TSH was 9.28 FT4 15 in May and I went on 25mg thyroxine. Been on 50mg about 8 weeks now) If I don't have the bloods done it's constantly hanging over me that I need them (December bloods were all ok other than thyroid. He did a full sweep then other than the lupus etc) but I also am terrified of doing it. I never used to be like this but this last year it has hit me since the nurses room and being unwell with my thyroid. I just wish my inner fighting spirit would return who would do anything for my kids sake if not for my own.

Any advice apprecaited.

I have been so upset today so far.

Thank you

Julie

21 Replies

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  • So sorry to hear this. You are not well and things are getting on top of you. You know you need to have bloods done and you sound like you have an understanding GP that will come to the house. I don't like needles - who does? But I find if i drink lots of water before a draw it comes out much faster and you don't feel it. Lying down will help also. Having the blood done will help get to the bottom of your health problems so it's well worth it. Sending a big hug. 😀 You will be fine! X

  • Thank you

    It's not so much I fear the needle, I don't like them, like yous said who does, it's more I fear my reaction after what happened in the nurses room. I fear a panic attack that strong.

    I appreciate your reply. I do have to do this and won't back out now.

    Julie xx

  • Hi Julie I know what you mean and that fear is strong, but don't forget it's quite a common reaction and they are used to dealing with it. My son in law passes out with panic attack fear. Please try not to worry about it. Get your bloods done and post how you get on and the results. Xx

  • Thank you.

    That's my fear, passing out due to the bad panic. I was told you can't faint with panic as blood pressure raises, which is the opposite of what it needs to do to faint.

    I will, thanks x

  • Hi Julie

    I have no experience of this I'm afraid, so cannot help. I did see this post today, however, I have no idea whether it would be of any use, but I thought I would mention it. :)

    healthunlocked.com/thyroidu...

    L

    x

  • Thank you very much Louise x

  • I used to be fine and then I had a terrible experience with a trainee phlebotomist so I sort of know what you are experiencing.

    What I find really helps is if I have a glass of cordial beforehand. I always tell whoever is doing it that I am scared and apologise in advance. I get the doctor to talk to me - distract me whilst its happening - ask questions about anything! And then I breathe my way through it - yoga breathing. Deep breaths through the nostrils and slowly exhale through the mouth. I always get through it now. This really helps me.

  • Thank you so much Helena, it good to know someone understands. I'm so glad you have found a way to get through them.

    I have been practicing a lot of yoga and breathing this week so hopefully it'll help me tomorrow. I just need to learn to not panic if I feel my face go hot. That seems to be my trigger.

    Thanks again.

  • I have to have my blood drawn tomorrow first thing - 8.20am so I will begin with my usual dialogue :-) "I'm scared - had a bad experience". I sometimes have the hot face experience out of nowhere. To me, it never feels like blushing as its all over the face. Weird.

    I'm sure you'll be fine. Six years ago I had a panic attack and learned yoga breathing as a result of that. I've not had one since; although I've come close to it a few times. The breathing gets me through it. When I am angry - the breathing gets me through it. I have an inkling that its changes in lighting that brings it on for me - moving from dark to light, the glow of UV lights. Not even going to google it in case it brings up something for me to worry about!

    All the best for us tomorrow. It's my Birthday tomorrow - what a way to start the day!

  • Thank you Helena.

    Is it the belly breathing you do? I'm hoping if I can manage to keep my focus on the belly breathing it'll keep me grounded.

    Awww I hope tomorrow goes well for you and you have a lovery birthday.

    Julie xx

  • yes - the belly breathing.

    Thank you!

    Helena xx

  • Hi jingyd35, I totally understand how you're feeling. You've been dealing with such a lot and are doing so really well in moving forwards and getting this test done. It's awful having a bad experience and when feeling so poorly our brains seem to remember it all the more, as you say it's the fear of how you might react which is at the bottom of pretty much all fears.

    But I'd say at this stage dont underestimate how much these deficiencies and conditions can affect how you think and feel like and keep reminding yourself you are doing as best you possibly can,with how you are feeling right now. It's so easy to talk yourself down and compare how you used to be able to do things okay, but remember you weren't trying to cope with what you've recently experienced and are experiencing now, then. If that makes sense...

    Sounds like you've been working so hard with your yoga and breathing, try and trust yourself a bit that it will help and remind yourself you are in complete control of the situation. If you really wanted to say stop at anytime during the test you could, but you've done brilliantly in organising it and just try to focus on the fact you deserve to be getting all the help you need and that test will help you on your way. You wouldn't want to be struggling on when there's a little something that may need tweaking. Your dr sounds understanding, which is a real bonus. Like Helena said I think you feel much better if you tell them how you're feeling which you've done, rather than you feeling you need to be putting on a good front and adding to the stress.

    Remember you're not alone, you can do it...take care and will be thinking of you tomorrow...

    P.s. Is b12 / folate in the test, think I read you were low in it before, would be worth checking...

    Am reading about EFT at the mo, it's said it can help with fears and anxiety and seems easily accessible, you might like to google it? x

  • Thank you Jo for your kind reply.

    I am dreading it, I know I will panic infront of the GP and i am terrified I will pass out as it's 5 tubes being taken, oh anxiety is telling me all kinds will happen lol!

    It really is awful when you can't be your old rational self and face a fear because you know it's in your best interests. I have done before but now it feels much harder to the point I will panic :-( I want them doing as I want a full MOT for peace of mind. I used to face anything despite my panic attacks, and they usually didn't happen. Now though the fear is worse so I know it will but somehow I can't let that stop me tomorrow. I am absolutely terrified.

    Yes I had my B12 and ferritin tested last year and were low but now B12 is 1070 and ferritin near 50 but he is testing them again. He is doing FBC, blood film, B12, folate, ferritin, glandular fever, nuclear antibodies, Liver function, HBA1C, random glucose, Serum electrolytes, Createine Kinase and CRP. He isn't leaving much off is he haha! 5 tubes it says which scares me even more I will faint but it totals 16ml according to my calculations.

    I am so afraid. He is aware I am scared, my husband told him it's why I have put it off but now I want to face it, well I wouldn't say want to but I know the worry of why he wants to do them plays on my mind a lot plus the fact I am feeling so terrily fatigued still.

    I have to do my finger prick thyroid test next week too and even that makes me anxious. I just hope tomorrow I don't faint or panic too much and it doesn't put me off future tests. I have to take this first step and I am so scared facing it as it's become a phobia since what happened in the nurses room a year ago.

    Thank you for your kind words, they mean a lot to me. I appreciate you replying.

    Julie x

  • Thanks for your reply...can't write much now, but just hoping you're feeling okay and that old test is done and dusted...:) x

  • Thyroid hormones do all the work for our metabolism. Anxiety and panic can set in when there's not enough hormone going round in our system for our needs and the body lets us know.

    Please ask your GP to do a Free T3 blood test as that's the main and only Active hormone our receptor cells need. The brain contains the most and heart needs sufficient as well.

    If your Free T3 is too low that could be one of the reasons for panic/anxiety etc. and you mention Chronic Fatigue as well as hypothyridism. Chronic Fatigue might be due to insufficient T3 for your receptor cells and if you are on T4 only it might not be sufficient to convert to T3. T4, levothyroxine's job is to convert to T3. This is an excerpt and it's a pity Endocrinologists know less about the thyroid gland and hypothyroidism, it would appear:-

    Current professional guidelines for the diagnosis and treatment of hypothyroidism

    abandon clinical medicine for a laboratory exercise:

    TSH and free T4 normalization. This approach is both illogical and ineffective. The TSH

    level is not a measure of thyroid hormone sufficiency in any given patient, either untreated or treated; reliance on the TSH produces both under-and over-diagnosis and undertreatment.

    Dysfunctional central hypothyroidism with a normal TSH may be more common than primary hypothyroidism, and TSH normalizing T4 therapy neither normalizes T3 levels nor restores euthyroidism.

    The TSH test is useful only for investigating the cause of clinically diagnosed hypothyroidism.

    hormonerestoration.com/file...

  • Thank you Shaws

    My FT3 was 5.6 last test in the range of I think 3.1-6.8. Ft4 was 14 -15 each test in a range of 12-22. My FT3 has always been ok.

    I will be having my FT3 tested with Blue Horizon next week when I do my recent thyroid bloods.

    Thank you

    Julie

  • If your blood tests are fine and you're still not feeling well it could be the fillers/binders in your meds which might be the cause. I had to try quite a few before I finally got there when I had no symptoms and felt well.

  • Thank you.

    Ive only been on 50mg 2 months. Tsh was almost 8 before that and 9 in may. So I guess ita very early days on levo.

  • Yes, you're right, it is early days and you are fortunate to have been prescribed with a TSH of 8 as some doctors wait till it 10+. or not even think you might be hypo.

    A blood test should be taken about every six weeks and you should have the earliest appointment and fast, although you can drink water. Allow about 24 hours between your last dose of levo and the test and take it afterwards.

    Because your TSH is 8 you might feel better sooner when thyroid hormones are stable and when TSH is 1 or lower thereafter you'd only have a test yearly unless symptoms develop. Increases should be given of 25mcg levo until you are symptom free.

    You are very fortunate in your GP in that he shows he cares about his patients welfare.

  • My GP prescribed levo when my TSH was 9.28, the levo brought it down to 6.8 ish but then it shot back up again to 8 so I am now on 50mg.

    My GP is great, it took a long time to get him to prescribe levo, my TSH was 6.5 in January, 7.5 in March then 9.28 in May, then he finally agreed to treat me as I was feeling very fatigued and poorly. He is a good GP though and I am lucky he wants to help.

  • Yes you are lucky. He was slow to act as that's what the guidelines state 'no levothyroxine until TSH is 10'. They do not allow the doctor to use his initiative and prescribe - even on a trial basis but don't give a fig about how unwell some people are and have disabling symptoms well before it reaches 10. Despite other countries prescribing around 3+..

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